Fault, blame...and guilt

Fault, blame and guilt. The triad of unhappiness with guilt possibly the most destructive of the three. Guilt is part of every parent's life. Not enough play/read/listen time? No healthy, balanced, home cooked meal seven days a week? Not enough money to give them everything you want them to have? Familiar and normal. 

Feeling that you somehow should have been able to prevent or fix your child's disabilities? Familiar yes, familiar I reckon to most parents with a SN child. But normal?

I've done battle with it for a long time. My Nathan was absolutely fine until possibly the beginning of my long labour or even slightly before. He had more or less recovered from whatever had hit him as he was pink and bouncy at birth, not blue and floppy. This makes him a bit of a rare case as most similar cases happen through oxygen deprivation at birth. That's why it took them five days to find out why he kept having seizures in his first 48 hours - significant brain damage. My consultant's best guess is that my body doesn't cope well with labour and triggered an inflammatory response in Nathan's brain. So I felt I had let my precious baby down. My womb should have been a safe place, and it wasn't. At some point it became a dangerous place and there's nothing I could do about that.

A few years later I had a very early miscarriage. A good friend, knowing me well, said 'Make sure you don't blame yourself'. Which is exactly what I was doing. I hadn't kept the first one safe, so what made me think I could keep the second one any safer! It's worked through and behind me now, but that has taken a lot of time and a lot of pain. And so much wasted energy. At least now I only feel guilty about not doing his stretches enough, not spending enough time doing exercises, not spending enough time practising reading and talking...ah the usual gumpf. 

Blame and fault are another game altogether. I have friends who are struggling with feelings of pain and anger towards medical professionals who didn't listen, didn't act, and then didn't take responsibility. It leaves them with an ongoing sense that it needn't have been this way. I feel grateful that I don't need to struggle with that. On one hand we all make mistakes. I make mistakes. If my mistake affects a client I grovel to the Court and ask for my client not to be prejudiced by my error. There is precedent for that, senior judges have said over time that clients should not be prejudiced by the mistakes and oversights of their representatives. So that sorts that. Me being embarrassed is ok as long as the problem gets fixed. A doctor or midwife making a similar mistake can have consequences that cannot be fixed. Oxygen starvation, brain damage, disabilities. A doctor or midwife doing so on an overcrowded, badly run ward while refusing to listen to the mother who thinks something is wrong is a tragedy for all concerned. 

A woman is very vulnerable in labour. I remember lying on my back, helpless, connected to drips and incapacitated by an epidural while my baby got tired and distressed. I was confused, scared and totally dependent on the judgement of others. When I met my obstetrician some time after birth he put Nathan's heart monitoring sheets on the table and said I could probably find someone who would say that I should have a c-section much earlier in the labour. He was an experienced expert-witness, I'm a legal bird, it made the conversation easier. Crucially I feel that (unlike many!) I had good care, I had at least one midwife with me at all times, was given options and choices where possible and was clearly told when it came to that point that my baby was too tired and needed to come out now. I know I was monitored by a doctor for quite some time and I believe that a careful judgement call was made. Maybe a mistake was made, although I am inclined not to think so. I feel able to say that mistakes are made, and to let it go. I do not feel and never have felt an inclination to sue the hospital. 

For some parents not suing is not an option, not because they are such vindictive people, but because their child has been left so profoundly disabled that 24h care is needed. Suing is then the only way to make sure that care will be there, because social care budgets simply do not stretch and as a result it is rare for anyone to get the care they need and deserve. So in a real way the NHS' insurers pick up the tab for the care the welfare system should be providing. False economy? With the current vicious cuts in funding this will only get worse with more parents being forced to take legal action to provide for the care needs of their children.  And a culture of blame against medical professionals continuing. Not good for anyone. 

So what am I trying to achieve with this rambly post?:

I'm calling those fellow parents of SN children to stop blaming themselves, to stop feeling guilty. If you could have prevented your child's troubles you would have done. You are good like that. 

I'm calling for grace and empathy for overworked midwives and junior doctors who staff underfunded, understaffed, exhausted maternity department and end up making errors of judgement. 

I'm calling for the government to stop funding managers and targets and to spend some money on the staff that is actually needed on the wards. 

And for a universal amnesty on guilt. Guilt is like a thief in the night. It robs you of joy and leaves nothing in return. Grace not guilt, that's what I say...

Special mummies for special babies.....

Special mummies for special babies. Yes that one. I've mentioned it before in my first blogpost. That phrase that I advised you not to use within my earshot.

People using it frequently believe that it is a compliment they are giving you. It comes coupled with sentences such as 'You are so fantastic with him' and particularly 'I could never do that'. When I object against the phrase it is frequently seen as me being too modest, and that is totally missing the point. It makes me angry because it suggests that I somehow have special gifts that make it 'ok' for me to have a child with extra difficulties. No it isn't and no I don't. I was pregnant just like you, had dreams just like you and had a baby just like you. I didn't come prepared, I didn't get extra training and no I am not a specially nice or patient person. There is nothing in me that makes me specially qualified to look after my SN child except the fact that he is my child, I am his mum, and I love him to kingdom come and back. And that is why you could do it too, if you had to. And to be really harsh, you may still have to. 

There is also a deeper level on which it makes me unhappy and restless. The idea that God somehow picked me to look after Nathan because Nathan was going to be disabled suggests that God deliberately made Nathan disabled. After all he grew in my womb for approximately 8 months and 3 weeks before coming to grief. And no, I do not believe in a God who makes children disabled. I believe that ours is a fallen world in which many things go wrong, including illness and disability (and earthquakes, hunger, wars, sexual abuse, addiction, broken relationships...) because we as a world have turned away from God. God didn't make Nathan disabled. God longs for Nathan to be whole and will one day make him whole. Why he has not already made him whole in this life is another question, and one to which I have no answer. But the long and short of it is that I do not have special God given skills to look after a disabled child. It is God who helps me through, who gives me strength day by day, but that is another matter. 

Special babies make special mummies, that much is true. You never know how much of an obnoxious battleax you are until that side of you is called upon to make sure your special sprog gets what they need, fighting your way through lack of services, upsetting formfilling (DLA forms anyone? Such easy extra money according to some newspapers. All you have to do is write a 40 page form about all the things your child can't do and submit lots of medical reports and then you hope for the best) and funding cuts by a vindictive government whose prime minister should from own experience know better. 

But the only true special one is my special son. I bow to his sunny nature despite everything, and his stubborn bloodymindedness which comes from having to fight so hard for what others take for granted. I'm dead proud of him. 

Sweet with a touch of bitter

Today is a special day, my big little man is five. FIVE! How did that happen? He has had an exciting day, lots of fun at school and presents when coming home and cake for pudding! Party with his mates tomorrow and cake with family on Sunday. He's proud to be five, waving his handful of fingers at everyone who will look, including the grandparents, via Skype. 

But today is also the 5th anniversary of the worst thing that ever happened to me, and to his Daddy. 12 hours after birth we were in intensive care with a baby who kept having fits, every fit every five minutes stopping his breathing. Incubator, intubation, drugs, fears, wires, monitors, questions, no answers, confusion, and a great deal of hurt. 5 days of uncertainty about his life, weeks and months of uncertainty over his future. 

It is sad that on a day that should be totally happy, there are always memories of those terrifying early days. Don't get me wrong, it's nothing like the pain of losing someone you love, and joy is very much the dominant emotion of the day, joy about having such an amazing, clever, loving and special small person in our lives. Celebration of the miracles God has done in his life. Remembering that the one thing they were sure of was blindness, followed by epilepsy and how they were wrong on both counts. Delighted to be wrong I hasten to add. And there's nothing like children to keep you living squarely in the moment. 

Some people may say that I should 'move on' from it, forget about it, it's in the past and look how well he is doing now. Fact is that I have moved on, I had help to heal from the trauma experienced and so much support from loved ones. I don't have to move on any more than this. It is part of who we are as a family. Something of this magnitude shapes forever who you are an how you do things, whether you like it or not. In some ways for good: I never take the health and happiness of loved ones for granted, intensily enjoy beautiful moments, do not give a toss about money or security and rarely look further than about a year ahead. And it makes me even more proud of that little boy who has been setting himself projects to achieve from about 11 weeks old when he accidentally rolled over and became obsessed with repeating the feat. Who was called 'a very determined little boy who persists when something is challenging' by one of the experts assessing him for a statement of special educational needs. 

It is quite ok to feel a touch of grief, to think that he deserved a better start and fewer challenges. A touch of grief for that lovely newborn baby time that never really was. It doesn't stop the here and now, and it only strengthens the joy. God is good, and God is faithful. 

Last night Nathan said 'Nathan'. Almost five and he's cracked it, he can say his name. I admit it, I squealed. 

We've had long times of saying 'no' when asked for his name, then he called himself 'Naynay' for a long time. In the last month or so there was a shift to 'Naynen' and then finally last night the 'th' appeared. He beamed with pride. 

Some cliches are true. The one where they say that it may be tough to have a child with special needs, but that you will never know joy like the joy you feel when they achieve things that others take for granted. That one is true. It is very true. 

He managed to pull to stand over Christmas and oh my the whole world was told about it. It's the first thing I said walking back into the office after the break.

There simply is no joy like it. And it way outweighs the occassional bouts of heart ache watching him struggle with things. 

List of things that you don't expect to come with your child when you're still pregnant and dreaming:

Walking frame (First Rifton Pacer, now the far more exciting bright yellow R82 Mustang!!)
Tripod walking stick
Specialist Trike (Possibly the only non breathing thing we would rescue from burning house)
Leg splints
Oversplint boots
Kneepads
Arm splint
Botox injections
Juni chair
Size Two Mountain Buggy age 5-9 (when folded almost too big for even my boot)
iPad with speech software (Think Stephen Hawkin with pictures)
Physiotherapists (let's hear it for the amazing Heather and Julia who have looked after him for nearly 5 years now)
Occupational Therapists
Speech therapist
Paediatric Consultant
Orthopaedic paediatric surgeon
Fantastic special school 
Specialist school transport (Jackie and Dermot are the best)
Disability Living Allowance applications
Motability Cars
Blue Badge (A blessing and a priviledge)
Ignorant Health Visitors
Statement of special educational needs
Home-school books
Referral forms, application forms, charity grant forms

But hey

Who cares. We've got this. So worth it. 

Have you heard of the poem 'Welcome to Holland'? It is about how it feels to find out that your child is autistic but can just as easily be applied to many other disabilities. If you do not know it, you can read it here. As far as I know parents of disabled children either love it or hate it. I must confess I really do not like it. Life with Nathan is not, and will never be, a second choice destination. He is a true gift from God and my perfect child. The best way I can sum it up is 'I never felt entitled to Italy', with Italy presumable meaning having a child that has 'nothing wrong' with it. Children are precious gifts, whether or not they can walk, whether or not they are autistic, whether or not they have behavioural challenges. It does not change their value as a human being. My life would not have been better, richer or nicer if Nathan had not been brain damaged. Easier maybe. But not better. It would have been very empty if he had not been born. 

A child is always a gift, whether 'perfect' in the eyes of the world or not. No one knows that better than those who have experienced or still experience the pain of childlessness. Except maybe those of us who are given a child with special needs (please do not say 'Special babies for special mummies within my earshot. That would be a very unwise thing to do. I can explain if you wish). Those who need to face up to the fact that there are people out there who think that their child is second rate, should not have been born, is a burden. 

A child is received by raising empty hands to God, not by going to a dealership and ordering size, colour and specification. A child is given. 

My Nathan is perfect. I've just been to check on him as he sleeps and yes I can confirm he is perfect. He is my baby, my miracle, my 

''Gift to me
A song that's free
Coming Down in Time and Season
From a higher place
and higher ways
and a Love that gives no reason''
(Martyn Joseph, Gift to me - this is my Nathan song, I sang it to him when he was inside me, when he was crying as a baby, and at his baptism). 

Maybe there are people who firmly plan to go to Italy. They will come a cropper one way or another. Their child is bound to disappoint them one way or another, or life will. Me, I am blessed. Truly and utterly blessed. And in love with my amazing child, who was fearfully and wonderfully made. (Psalm 139)

Getting tough with the outside world is one thing, getting tough with my own child is also not something I had signed up for. From the age of 6 months old, when the suspicion of cerebral palsy was confirmed, physio commenced and stiff hamstrings discovered I have been doing daily hamstring stretches. Making your child cry on a daily basis by hurting him is Not A Fun Thing To Do. Having your son use his limited language skills to plead with you not to do the stretches just sucks, there is no other word for it. The orthopeadic consultant saying Nathan's hammies are looser than his own mollifies a bit, but doesn't make it easier. All you can do is pin him down, persist, keep explaining that it is to make sure he can crawl, hop around, pull to stand, walk and ride his trike. Which he may understand but certainly does not appreciate in the moment. It's a surprise he doesn't hate me frankly, although the carefully built in ritual of hugs and cuddles after may have helped with that. 

Perhaps unsurprisingly it leaves you a bit puzzled when a mate tells you that she cannot get antibiotics into her two year old because said child doesn't like it and wriggles too much! 

Less dramatically it's sometimes necessary to be tough to help Nathan practice his skills. 'Want on sofa', ok then honey make a start, use your arms and legs, pull to stand then I will help with the last bit. No? Ok then stay on the floor. Strop. Ignore. Strop. Ignore. Pulls to stand, I help, I win, skills practiced. When he had just learned to sit himself up he would often find a suddenly very necessary toy just out of reach and would grunt at me to get it. And I would say 'You will still be disabled when you are 18, get on with it yourself'. Helping doesn't always help. 

Although that time in the supermarket car park when I told him to 'Help me to get you out of the trolley, you are not THAT disabled' I did see a few shocked faces! But you have no choice. Your aim is to help your child to become as independent as possible with a view to the future, and if that child has significant challenges you cannot leave it to happen all by itself!